Last reply 8 months ago
Feedback please help

Hi all i am looking for some feedback specially from anybody who is bedridden or unable to stand up from wheelchair . I have been degenerating continuously now i can no longer stand up from wheelchair and psychologically i torture myself everyday thinking I could do sth to avoid this that I am no longer fighting hard enough…..deep inside I think this is ms nth else I can do but I cannot stop hammering myself…..
Now i need carer coming 7 days a week.

Anybody there under same situation?.

Xx

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stumbler
9 months ago

@mmhhpp , I can’t really appreciate your situation, but in one way or another, we all keep hammering ourselves, to ensure that tomorrow is a better day.

Whatever our situation, we have to do whatever we can to try and retain our present capabilities, whilst making small efforts to improve our capabilities.

Although you are chairbound, there are still exercises and stretches that can be managed. Look them up on YouTube and start small and regular.

Just don’t let MS have all its own way.

Sending positive vibes your way.


finn15
9 months ago

@mmhhpp I agree, no one can appreciate your individual situation, but yeah tomorrow is another day and whatever your efforts or situation, remember everyday is a victory over MS. That’s how I look at it anyway .
Don’t be so hard on yourself, it takes a strong individual to keep going forward no matter what our situation


wjgregg
9 months ago

Dear @mmhhpp,

We are all with you, even if our multiple sclerosis hasn’t hit us as hard as your’s has. I have just discovered local multiple sclerosis support groups through the MS Society. Just put in your postcode on their website to find your local group. There are always people around who, even if they can’t be of physical help, are on the end of a ‘phone or could come to see you.

Keep using this forum, keep us posted and keep asking for help. It will be willingly given.

Take care of yourself.

Jon


mermaidia11
9 months ago

Ah love, what a position to be in, harsh, soul destroying torture. I feel your pain Chick, hence why I responded.

I’m not bed bound yet, but at 43 feel a lot older and the limited mobility gets me down. (And everything else) A lot. I have to talk myself out of stayin in bed, every sodding day.

I do all my stretches an exercises every day, but doesn’t make much difference, apart from tiring me out, a lot are now done lying down on the bed – the safest place.

You are fighting, have fought and continue to do so every day- or you wouldn’t be on here seeking answers and strategies.

Give yourself a break already!

You are only human and if that foot or leg isn’t co operating, it’s because your brain has been assaulted by an incurable degenerative brain disease, not because you didn’t ‘fight’ hard enough.

My goodness, it annoys me all the people who labour under the illusion that somehow fighting MS is going to ensure that it’s going to be selective in the bits it decides to eat.
It isn’t and some of us are unlucky in that it goes for bits we really need to function.

I suspect that you havnt heard from anyone who is bed bound- because those people have sadly given up and are past caring. I can see how that could happen, but that’s not you.
Because you are here, still curious. Still fighting, even though you still feel you didn’t do enough.

You did my love.

And now you are called again to do more than perhaps you feel capable of.

Can your MS nurse arrange for you to have a physio come to the house and do some muscle strengthening with you? Ask her and if not, then there are excercises you can do to get the ball rolling. It’s important that you elevate your blood pressure for a least 10 mins a day to get your blood pumping and those antibodies/white blood cells pumping round your body.

And please look into LDN ASAP. It’s cheap, non toxic (unlike the dmds) and dampens down the immune system – at least giving you a chance to rehabilitate and heal yourself a bit. It lifts your mood as well. Marvellous stuff.

Then you could progress to sitting back in your chair, and yes doing more exercises – I do disabled disco dancing in mine!

So get those tunes on, get that heart pumping, remind yourself your a warrior and shut out that nasty little voice telling you otherwise.

In the day stop yourself from overthinking by chanting – ‘I feel a bit better today, I am stronger’ a lot. You brain is clever, but also stupid, so fool the fecking thing by telling it positives. If it’s not positive, then don’t think it or say it. Its very easy to get trapped in ‘omg this is unbearable, I can’t do this’ etc chatter. Stop it.

And before sleep listen to some healing meditations.

And never underestimate the value of positive vibes sent to you, from us all.

You ain’t alone and thank you for sharing and be sure to let us know how you are getting on. We want to know every improvement.

Love, lite n angelic delight ✨🧚🏻‍♀️💐🌈💝✨


mmhhpp
9 months ago

Dear @stumbler @finn15 @wjgregg and @mermaidia11 thank you very much for your beautiful words .

Stumbler thank you for keeping this post alive. It really helps a lot

Yes marmaidia11 It is really hard when ms takes things away from you and you need to adapt again to new situation

I feel sometimes so lonely…… don’t get me wrong I am married with two kids even then the loneliness is overwhelming . Not able to share anything with them…..to the outside world i am a smily person, people say: oh you are always smiling! But inside i am broken.

Yes i will try to control those negn thoughts and I will try to dance more on my chair marmaidia11

Thanks for being there xx


mermaidia11
9 months ago

You sound a bit brighter already. Yay!

I concur re the boys’ comments ! Helpful and wise as always.

Of course no one understands who hasn’t got ms.
How could they?
They havnt experienced as much as one min of what you are going through day in, day out.

. It is a lonely road, but really would you want them to fully comprehend what you feel and experience? Probably not, because you sound like a brave and courageous person.

Be glad you are known for your sunny outlook. That’s true bravery right there and you should be proud of yourself.

And keep it up flower. Yes it’s lonely but this motley crew here at least can fathom some of what you are going through and are, and will be there for you.

You are never alone chick – and yes! Amuse yourself with a bit of disabled dancing! Anythin to get that blood pumping!

Take care flower 💐


grandma
9 months ago

Dear mmhpp, you say you have a couple of kids, get them to come sit on the bed they come in from school/college, tell you about their day, bed is a great place for helping with homework and one thing is guaranteed, you are always there, great place for telling troubles, Triumphs or just a natter. I’m a grandma, and whe. I was having a duvet day I taught my grandaughtet to read from bed but I also taught her to swim when I was more mobile. There is always something we can do. Don’t beat yourself up! 😍 Jill


rolly
8 months ago

yes, @mmhhpp, i’m in the same situation physically. i have to rely on a powerchair full-time and can no longer transfer independently because my left hand no longer works. the last 6 years since being ‘upgraded’ to secondary progressive have been a gradual decline, which has been scary, to say the least.
my wife is my main carer. she gets me up from bed in the morning and gets me dressed and everything, before going to work. later in the day i have a carer coming in to help me with lunch and emptying my pee bag and colostomy bag. and in the late afternoon and evening, when my wife is back, she takes over again. it’s certainly not the life we had imagined when we said our wedding vows 24 years ago. we are both 49 now, and we had envisioned something very different for this stage in our lives.
and yes, i have often wondered whether there is anything i could have done to avoid the decline. but you’re not going yourself any favours by beating yourself up about it. too many ‘ifs’ that will only make you feel worse.
as most of us, i have my so-so days, my bad days and my worse days, with the occasional good day thrown in. every day is a challenge, and when i wake up in the morning, i never know what the day will bring, what my pain level will be, whether my right ‘good’ hand will function properly, etc. weekdays can get lonely, as i can no longer leave the house by myself. but i always find myself looking forward to the weekends, which i can spend with my wife, with the occasional trip to the shops when i feel up for it.
yeah, life with ms sucks. but i’m still trying to find the good things, however small.

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